- Diseases, Disorders & Conditions
Fibromya**hole: When I Encounter Ignorance
When you have fibromyalgia, or CFS or any other "controversial" and poorly understood medical condition odds are you are faced with a great deal of ignorance.
I talk a lot about how to deal with this kind of ignorance, so, when I recenlty encountered it in a most unexpected place (the lips of a former highschool teacher) I had to share our exchange.
This all started with my former teacher asking how my pregnancy was going:
Teacher: Feeling good? Strong? Flexible?
Me: Strong, yes, I've been preparing for labour like an athlete preparing for a marathon. Good, not so much. My fibromyalgia is kind of kicking my ass right now.
Teacher: Fybromya**hole. You can kick it by stretching and just moving every damn day. Don't rust.
Me: Kick it? How is one going to kick a neurological disease through stretching?
Teacher: Cope. In a healthy way. It's syndrome, not a 'thing'. Lots of modalities - manifestations in different people. It hurts, we inflame, we rust. Keep oiled and keep moving. Vit D and E.
Me: Nope, it's a neurological disease that can be viewed with CT brain scans. Believe me, I write about this disease for a living and have had it for nearly 4 years. I do everything any doctor in the world would tell you to do to "cope". As well as take my meds.
Teacher: That doesn't mean it can't be tamed with physical exertion. The mind and the body are linked. I hope it works for you. I just don't believe a pill can deal with this one.
Me: I'm going to gently inform you that you're ignorance is showing. I work out about 1-3 hours a day on the days my pain allows. Like I said, I've had it for 4 years.
Teacher: We disagree, and I'm not ignorant.
Me: You can't disagre about facts. Sounds like you're getting your information from old research.
Teacher: I can only speak from my own experience. For many, many years.
Me: Exactly, FMS work differently in different bodies. Some people are lucky enough to be able to control symptoms with lifestyle changes. These ppl are fortunate and should not consider themselves "the norm". Others, myself included, employ every available form of therapy, medical, alternative and otherwise and still struggle to manage their symptoms.It's not becuase we aren't trying hard enough, and it's ignorant to suggest that is the case.
You may also find this informative, an update on recent research into the condition at Standford University: http://www.youtube.com/watch?v=jtc2JARVpPw
4 days later...
Me: Had a look at those links?
10 days later...
Me: Okay then,
1) I have dealt with forgivable ignorance often enough but never has anyone, in my entire life, been so rude as to use a term such as “fibromya**hole”. It was petty and immature and I’m surprised at you.
2) In the future you may want to consider how much you actually know before speaking. Over the last few years I have tried every form of complimentary therapy and lifestyle change available and found little relief or effective symptom management until I found a medication that worked for me. I tell you these things not because you are owed an explanation but in hopes of enlightening you to the realities of this disease.
3) Fibromyalgia is a neurological disease. It is one I write about for a living and as a part of that job I am constantly up to date on new research, you clearly or not.
4) You are ignorant, and it’s important to know what you do not know. Having only your own experience to draw on is, in this case, a perfect example of the breadth and depth of your ignorance.
5) Your ignorance, in this situation, is only matched by your arrogance; a dangerous and volatile combination. Certainly not one I would have expected from you.
6) Finally, in the future you may want to consider something called sensitivity. This disease has stolen much of my life and most of my dreams leaving pain and struggle behind. I would do anything to be rid of it. If I could I would trade both my legs to be pain-free. If it were less selfish I would die to escape it. Until you have experienced something like that, knowing that you can never escape it, I would suggest you withhold judgement and live your own life. If you have experienced something like that you seem to have forgotten the valuable lessons it can teach.
Teacher: Wow. I'm not prepared for your anger. Take good care.
Me: I wonder if you are open to learning the actual facts about FMS. And as a side note: when you choose to be that rude I think anger is an expected result.
There are ways I could have kept my cool a little better but even after this long this kind of thing pisses me off. For better or worse this was our conversation (edited for spelling and to remove names). I would love to hear reactions from both fibromites and, if any are reading this, people who think we're nuts.